Management

Leadership team

Bina Maniar Shah

Founder & CEO

President of the Board of Directors

In 2018, Bina founded Project 8p Foundation to accelerate research with the goal of treatment for chromosome 8p heroes like her daughter Karina. Since then, she has fully committed herself to the advancement of clinical and research understanding of rare disorders, in particular neurodevelopmental chromosomal disorders such as the 8p rearrangements. Shifting perspectives from disease specific efforts to innovative approaches that are gene-agnostic and cross disorder is a long term scalable vision of hers. As a result, she is the founding partner of the Commission on Novel Technologies for Neurodevelopmental Copy Number Variants (CNVs).

Her family resides in New York City where Bina earned her B.S. in Finance & Marketing from NYU Stern Business School as well as her M.B.A. from Columbia University. She has over 15 years of experience in finance in the areas of mergers and acquisitions, private and public equity investing, real estate development, and property management.

Bina leverages her business and entrepreneurial background and network to build bridges to improve efficiencies in a Collaborative Impact model for Team Science.

Her family resides in New York City where Bina earned her B.S. in Finance & Marketing from NYU Stern Business School

Lauren Chaby

Executive Director

Lauren E. Chaby, PhD

Executive Director

Dr. Lauren Chaby has applied her expertise in optimizing clinical outcomes in the biotech, non- profit, pharmaceutical, and research sectors, focusing on conditions affecting the brain. She has led preclinical and clinical programs including clinical trials phases I-III across a range of therapeutic areas, diagnostic development and implementation, as well as launched a multi- cohort repository for biospecimens and clinical datasets.

Serving as Executive Director at Project 8p is deeply meaningful to her, as a chromosomal translocation within her family has profoundly influenced the lifelong journeys of her and her loved ones. Her commitment to improving lives today while pioneering treatments for tomorrow reflects her dedication to advancing the field of chromosomal disorders.

Prior to joining Project 8p, Dr. Chaby was the Executive Director of Biomarkers and Scientific Operations at ALZpath, where she developed and led strategic scientific and communications initiatives to support the implementation of solutions for neurodegenerative diseases that currently serve patients across the US and Canada. Additionally, at Moderna, Dr. Chaby spearheaded an interdisciplinary initiative to maximize sample and data quality and developed systems to support a portfolio of more than 20 clinical trials. Prior to this, Dr. Chaby directed and managed scientific, strategic, and programmatic activities to accelerate the discovery and development of biomarkers and diagnostics for trauma-related brain disorders at a non-profit, Cohen Veterans Bioscience. Across her career, Dr. Chaby has been an advocate for scientific communication and has delivered two TEDx talks, more than 100 scientific presentations, and 25 peer reviewed publications.

Barbara Celona, PhD

Science Director

Barbara grew up in Sicily, Italy, and has a multidisciplinary background in molecular and cell biology, developmental biology, biochemistry, disease modeling, and multi-omics. Barbara brings a wealth of expertise and innovative insight as the Science Director of the Project 8p Foundation.

A resident of San Francisco since 2011, Barbara co-founded a company for biomarker discovery in neurodegenerative diseases in 2017 and has served as a scientific advisor for several startups and venture capital firms. She has also been a driving force in the leadership team of the Women in Bio (WIB) San Francisco Bay Area Chapter since 2019 and is a governance member of the Business Association Italy America (BAIA).

Barbara earned her Ph.D. in Cell and Molecular Biology from San Raffaele University in Milan, following a Master’s degree in Medical Biotechnologies from the University of Padua.

Her doctoral research uncovered novel mechanisms of chromatin organization and epigenetic regulation, with important implications for aging. During her postdoctoral training and academic research at UCSF, Barbara investigated molecular mechanisms of repeat expansion disorders and motor neuron degeneration, significantly advancing our understanding of motor neuron diseases by identifying a new RNA-binding protein involved in a familial form of ALS.

Passionate about advocating for rare disease communities, Barbara is profoundly inspired by the mission of Project 8p Foundation. She is committed to driving forward innovative research and technological advancements to develop effective treatments for neurodevelopmental chromosomal disorders, striving to make a lasting impact on the lives of those affected and their families.

Link to Publications

Kaiti Syverson

Patient Engagement Manager

Kaiti Syverson

Patient Engagement Manager

In 2019, eager to learn more about her daughter’s diagnosis, Kaiti attended Project 8p’s first Family and Science Conference. Drawn to the strength of the 8p community, she left the conference with a new calling, an opportunity to serve. Kaiti immediately stepped into the Patient Leadership Board’s (PLB) Community Support Chair position, where she assisted in the creation of Project 8p’s community programs, before eventually taking on the role of Co-Chair to the PLB in 2022. While she will continue to donate her time as Co-Chair of the PLB, Kaiti is enthusiastic about her next opportunity as Patient Engagement Manager and eager to continue serving the 8p community. As a parent and peer, Kaiti is passionate about advocating for 8p heroes and has a desire to support families through their journey.

Kaiti lives in Alaska, with her husband and two children, where she also earned a B.A. in Elementary Education. She is the proud mother to 8p hero, Chloe. Kaiti is dedicated to Project 8p’s mission, she believes in the power of the 8p community and knows that together we will advance our understanding and care of the 8p heroes that unite us.

Andrew M. Grumet

Legal Advisory

Andrew practices at Polsinelli where he is the Chair for Nonprofit Organizations. He focuses on charitable giving and philanthropy and the representation of domestic and international tax-exempt organizations. He counsels organizations on formation and organizational structuring, compensation and excess benefit/self-dealing advice, corporate governance, fundraising and state solicitation regulatory matters, corporate policies, UBTI issues and investments, establishment and modification of endowments and restricted funds, fiduciary duties, domestic and international grantmaking, tax and financial reporting, planned giving and special events.

Andrew partners with some of the largest multinational nonprofit organizations, foundations, mission driven companies, social entrepreneurs and philanthropists around the globe. For over 20 years, he has served as outside general counsel to numerous organizations providing practical and strategic advice. He has advised on some of the most significant transactions and projects, including, among others, structuring a variety of nonprofit/for-profit hybrids, impact investments, both social and development income bonds, one of the most historic art acquisitions in history, innovative incubator models, and some of the most widely seen cause marketing programs.

Recognizing that complex problems often require unique approaches, Andrew takes a collaborative multi-disciplinary approach to the clients he works with. His work with the Strategic Nonprofit Solutions team at Polsinelli exemplifies this approach.

As an active speaker and media contributor, Andrew has been quoted in TIME magazine, The New York Times, The Wall Street Journal and The International Herald Tribune, among others. He serves as an Advisor to the Restatement of the Law of Charities and Nonprofits, a restatement that clarifies the law governing charities nationwide.

Josh Wolf

Finance and Operations Consultant

Josh Wolf

Finance and Operations Consultant

For the past three years, Josh (he/his) has provided finance and operation training, coaching, and services to over 100 startup and growing multi-entity social justice , rare disease, fair housing, and technology focused nonprofits.

Prior to this work, Josh served as the Chief Operating Officer for Cory Booker’s Presidential Campaign, Director of Operations for the Mozilla Foundation, Director of Operations for MoveOn.org, Director of Data Services for the Democratic National Committee, and over a decade in political organizing and management. Throughout each recent finance and operation role, Josh established and managed the technology and financial and operating systems and providers that ensured the organizations he served were resilient, sustainable, and had a solid foundation for growth.

Chromosome 8P

For Families

Resources

Join Cause

About Us

Research

Resources

Providers

Leadership team

Management

Bina Maniar Shah

Lauren Chaby

Executive Director

Lauren E. Chaby, PhD

Executive Director

Barbara Celona, PhD

Science Director

Science Director

Kaiti Syverson

Patient Engagement Manager

Kaiti Syverson

Patient Engagement Manager

Andrew M. Grumet

Legal Advisory

Legal Advisory

Josh Wolf

Josh Wolf

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The Project 8p Foundation (Project 8p) was created in 2018 to:

The Project 8p Foundation (Project 8p) was created in 2018 to: